Alzheimer's disease often financially crippling as well

Saturday

May 21, 2016 at 9:06 PMMay 21, 2016 at 9:10 PM

Laura Nightengale Journal Star reporter @lauranight

PEORIA — Warren McReynolds drove 18 miles from his home just outside Peoria to Morton Terrace Healthcare and Rehabilitation Centre, entered the code to access the Alzheimer’s and dementia care wing then headed to the table where his wife of more than 45 years sat alone.

“Hi, Helen,” his simple greeting was enough to catch her attention.

Immediately she reached out.

“I love you so much,” she said, her hand pressed in his, and his other hand on her cheek. An instant later she seemed nearly oblivious to his, or anyone else’s presence. It’s one of only a few moments of clarity she’d have during his visit that day.

“Every once in a while you see a little bit of her,” Warren said.

Though she’s only 65, Helen McReynolds is in the advanced stages of early onset Alzheimer’s disease. Each day, Warren visits to help feed and care for her, but those glimpses of her former self have become more fleeting as the disease progresses. She’s more likely to be sleeping, confused or even hallucinating than to be speaking in complete sentences or interacting with another person.

And while the emotional toll has been steep, the disease has been financially crippling as well. Helen’s 15 months in the nursing home has depleted the meager savings the couple had managed to put away.

“I, a long time ago, figured that retirement just wasn’t in the cards,” he said. “I simply can’t afford it. There’s no two ways about it.”

Helen McReynolds is just one of 5.4 million Americans living with Alzheimer’s disease. The financial toll this year for the care of those patients is $236 billion, a number that’s rapidly increasing under an aging population. The Alzheimer’s Association estimates that by 2050, as many as 16 million people in the U.S. will have Alzheimer’s or another form of dementia, and left unchecked the annual cost of care is expected to top $1 trillion per year by then.

While some aspects of Alzheimer’s and other dementias are relatively well understood, the financial implications to families affected by the disease is relatively unexplored, prompting the Alzheimer’s Association to conduct a nationwide survey of more than 3,500 Americans. The staggering results of that survey were released in March and illuminated just how costly the disease is to caregivers, who reported cutting back on food and their own medical care to provide for a loved one.

‘Medicaid or big trouble’

The decision to move a family member into skilled nursing is never an easy one. It was both Helen and Warren’s first choice for her to remain at home as long as possible, but her deteriorating condition had reached a level that the care she needed was greater than he could provide.

“I reached the point where I realized I just wasn’t taking good enough care of her,” Warren said. “The problem I had at that point was convincing myself that putting her in a place like this was better for her.”

He checked her into the nursing home in March 2015.

“The hardest thing I ever did in my life was leave that day. I didn’t think I was going to make it out of the building,” he said.

“It was like walking was impossible.”

Medicare will shoulder nearly half of the total cost of Alzheimer’s care this year, but it doesn’t provide long-term care in a skilled facility for those, like Helen McReynolds, whose needs are greater than family can provide.

The average cost of a semi-private room in a U.S. nursing home was more than $80,000 a year, according to a 2015 survey by Genworth Financial, Inc. That’s $220 per day, and for many older Americans, insurance offers little relief.

Medicaid will cover health-care costs for people with very low income and kick in for some families who already have spent most of their savings, but as the McReynolds learned, being accepted to the program can be a long and complicated process.

“For us at this point, it’s Medicaid or big trouble,” Warren said. “If we can’t get the Medicaid straightened out, we can’t afford to pay these guys.”

Families, in general, will cover 19 percent of care costs out of pocket, with the majority of those costs coming in the final five years of life. Studies also have shown that the burden is disproportionately high on families that are already financially stressed.

Warren cut back his hours and Helen left work altogether shortly after her diagnosis, but today he describes himself as “less retired all the time” as he tries to balance bringing in income and making time to care for his wife.

The cost of care

Jeff Johnson can remember clearly shoving his Link card into his pocket as he greeted an old friend in the grocery store checkout line.

In all of the hardships he encountered caring for his father during the eight years he lived with Alzheimer’s disease, accepting government assistance was one of the toughest choices he had to make.

Living in St. Louis and working full time when his father was diagnosed in 2005, Jeff changed jobs and moved back to Peoria to be closer to his parents, but as his father’s care became more demanding, Johnson took on a greater and greater role to help his aging mother shoulder the responsibility of caregiving.

He went from working full time, to part time then taking on only odd jobs now and then as he burned through his savings and retirement funds. Eventually he was living in his parents’ home, providing around-the-clock care to his father, living without health insurance or income. His mother and father had made a pact to keep him out of a nursing home if at all possible, and Johnson was determined to help keep that promise.

“I was working. I was giving back to the economy,” before his dad’s illness, Johnson said. “I went from that to, not only was I no longer paying taxes because I didn’t have an income for a couple years, now I was taking money. … Which is not something that I’m real proud of, but I didn’t have a choice.”

Care contributors — those who either provide care themselves or contribute financially to care — lose, on average, more than $15,000 in annual income. They’re also 28 percent more likely than other adults to eat less or go hungry because they can’t afford to pay for food. And 74 percent reported some level of concern about their own health after putting another’s care ahead of their own.

In Illinois, 590,000 family and friends provided 671 million hours of unpaid care in 2015, with an estimated $8.2 billion in economic value.

For people such as Johnson, the effects can last much longer than the duration of the illness. Johnson struggled for two years to find a full-time job after his father passed away, hamstringed by a lengthy gap in his work history.

His break came when he was hired by someone who’d also had a family member diagnosed with Alzheimer’s who understood his dilemma.

‘This could bankrupt us’

As the prevalence of Alzheimer’s disease continues to rise, researchers have yet to find a cure or effective treatment. Left unchecked, the costs related to Alzheimer’s care and dementia will increase exponentially, with the majority of that burden falling on publicly funded insurance programs.

Johnson serves as the chairman of the public policy committee for the board of the central Illinois Chapter of the Alzheimer’s Association, where he leads local efforts to find a legislative solution for sustainability in Alzheimer’s health care. In short, he said, the rising cost of Alzheimer’s and dementia won’t just devastate families, but could bring down the system as we know it.

“I’m worried about terrorism, I’m worried about all those things, but this could bankrupt us. This could be the greatest threat to our country,” he said.

“This isn’t just a condition in a vacuum.”

Nearly one in every five dollars spent by Medicare is for a person with dementia. As the number of diagnoses rises, it’s expected to be one of every three dollars by mid-century. The average per-person health care spending for a Medicare beneficiary is three times as high when that person has Alzheimer’s or dementia, totalling nearly $50,000 per person in 2015 compared with $15,550 for those without the disease.

Johnson and other advocates are pushing for greater emphasis on research to help curb costs to families and the health-care system.

While Alzheimer’s is the sixth-leading cause of death in the United States, it receives only a fraction of the research funding that goes to other conditions such as cancer, heart disease and HIV.

For those conditions, including some types of cancer, that investment is paying off. The death rates are going down, but for Alzheimer’s the opposite is true.

Great strides have been made in recent years, including $350 million in federal funds promised over the next 10 years for research and caregiving costs and a pledge by Democratic presidential frontrunner Hillary Clinton to invest $2 billion per year in hopes of finding a cure by 2025, with more legislation pending at both the federal and state levels.

For Johnson, who knows all too well the lasting costs of the debilitating disease, the sacrifice was never too great to do what was best for his father, but he’ll keep fighting so that others might not have to.

“I wouldn’t trade it. I wouldn’t not do it,” he said, “Even if I knew then what it would cost both emotionally and financially.”

Laura Nightengale can be reached at 686-3181 or lnightengale@pjstar.com. Follow her on Twitter @lauranight.

For more information or to make a donation, contact the Alzheimer’s Association Central Illinois Chapter at 612 W. Glen Ave., Peoria; call 681-1100 or visit www.alz.org/illinoiscentral/. You also can call the Alzheimer’s Association toll free at (800) 272-3900.

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